Thursday, May 31, 2012

I took Camden into the ER for one thing, and came out with unexpected new information. Not in the plans. Heart problems were never in my thoughts.

He had another scary low heart rate drop the other night, so the next morning (after watching the pulse ox for the rest of the morning) I took him to Shands with my loyal hospital companion, my mom. =) ( Marcus would come in a minute, but my man works his butt off, has so much to do for our family so unless it is an emergency I tell him to stay in Jax to get his work finished! Love you and I thank u for that, hunny!) They decided to monitor him, but didnt see anything wrong, which was to be expected. The only time his heart did this CRAZY low dropping (like in the 20s) is when he is in REM, which he never got the chance to do with vital signs taken and beeps going off all through the night. So he had an EKG, which looked good, and then an ECHO. I waited anxiously for cardiologiest to come around and by 2 she was in our room sharing the latest.

THey found a PDA, which normally is detected/repaired during infancy ......but he will need surgery now. Here's a brief description for my "unfamiliar with heart problems" people: Patent ductus arteriosus (PDA) is a heart problem that affects some babies soon after birth. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary (PULL-mun-ary) artery.

Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation.

Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns.

In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries.

Oh! Guess what?? Im an "unfamiliar with heart problems" person too. I thought I didn't "do" hearts. I have to keep looking back so I can remember what PDA stands for! Camden supposedly had a great heart! Change of plans! I guess not knowing was a good thing looking back, (it wouldve been so much to deal with along with other issues) but on the other hand this should already be fixed. Especially by 3 yrs of age. Thanking God it hasn't done any damage ...that they can see of on the tests. Thanking God that I took him in and now know of this problem, although I felt pretty crazy up there.

The pulmonary hypertension reared his ugly face as well. THat was a word I NEVER wanted to hear again, but before the cardiologist came in, the assistants had came in and told me it was slightly elevated. Ok, normal in CDH, but it was supposedly gone in Camden and wasnt welcomed back. Im assuming the PDA is why it is back.

So the low heart rates? NOTHING to do with PDA. So, he is wearing a holter monitor to record rhythms tonight while he is his own bed, in a deep sleep, hooked to a pulse ox! I also didn't think I would ever have to worry about him sleeping again.

Maybe this was all a way to get me to go to hospital and find the PDA. I had no plans on going back to cardiology with the "ok" to do so last year! Im shocked and of course upset over my baby. Camden has enough surgeries to endure and didn't need another one. He has enough to deal with. I am a bit scared. PDA is considered one of the minor heart surgeries but a) if you are touching my baby's heart, that is not minor in my book and b) well, Camden's history says it all. But, this is something that has to be done and we have so much, so very much, to be thankful for. I am focusing on that and feeling very grateful for many healthy qualities of my boy! We will meet with the surgeon to discuss details in the next few weeks.

As for the nissen repair....that is now second on the "surgery list", although he just ate a pickle and a piece of ham and didn't choke. If the nissen unraveled itself, that would be nice. That would be WONDERFUL.

As for the retching over every tube feed...we are thinking it may be a soy intolerance. (he has milk allergy and has been on soy) I tested this out today with diluted juice and he did NOT retch. I should have know better and remembered that he could do this with soy, but honestly, I completely forgot being so focused on the mechanical things. I almost didn't want to type this part out because I know things change like the wind with his eating issues, but that is what it is today. I would love it to be a soy intolerance!!

He is getting over the sickness and is just left with a wet cough and on the mend.

He wasnt happy going to the hospital but it was a good time for him to learn trust because I promised him there would be no hurts and of course there wasn't. By noon today he was happy in the bed, making it go up and down, up and down, watching Yo Gabba Gabba, and demanding his Nana to do things. He thought he was a king. He also just told me he want to go to Wild Adventures and ride the dragons. He is walking around holding his heart monitor so it doesn't drag the ground. He is ok! =0)

Tuesday, May 29, 2012

Im not going to write out all my worries and concerns, but here is what has happened. Camden is only hooked to pulse ox while he is sick so I can monitor O2 sats to know when he is in need of O2. The other night the alarm went off and his heart rate dropped into the 20s before I nudged him to wake and his HR went up again. He was on oxygen, and sats did not go down, but scared me to death. Last night (well this morning around 340) I monitored him again, and it happened again. This time his sats were going down (he wasnt on O2) and before I woke him his O2 sats were 93 and his HR was 23. After I nudged him he was back to normal. Bottom line a HR in the 20s isn't right and we have an appointment Thursday morning. His heart has always been good and actually on the faster side, so this has caught me off guard. Also, I dont know how long this has been going on because he hasn't used an apnea monitor for mths now and of course I usually just do spot checks with the pulse ox machine.

I called Dr Ks office today to get some more tests ran before rescheduling the nissen surgery, but the cardio is first on my list now. Amazing how greatly your priorities change overnight.

Saturday, May 26, 2012

....is what Im thinking. He has had fever since Wed night, then last night the fever continued, his sats dropped, I put him on O2, and I rode over to our teeny tiny hospital and asked for an xray. We were out of there in no time, and they didnt find anything wrong with xray. ok, good...?

A few hrs ago the fever stopped, and sats started to go up so as of now he is off O2 and doing well. I will watch him through the night and if he drops again or starts with the fever I will be heading to Gainesville, but I think he is getting better.

So, this is what stinks about CDH. I can accept the fact that he needs O2 when he gets sick. He had severe respiratory distress, ect.... ect, but when a CDH child reherniates, (organs get thru the diaphragm up in to chest cavity again) there are so many symptoms they may have or may NOT have. Fever is one. It may JUST be fever. Or retching, (or throwing up for kids that can) tummy pain, constipation, on and on. Camden is also retching again.... Daily. =-/ Has been for weeks. We are still on a slow rate on feeding pump, and we are having to go slower and slower. So, is the retching again another "new normal" for him as well? He was doing so good?! Once again, I can accept these things, but not knowing when it could be reherniation or infection in the lungs is why we head to the hospital each time. ALSO there have been MANY parents that have shared with me that their child's reherniation was NOT seen on an xray. Also, Camden was missing most of his diaphragm, so his chances of reherniating are a little higher. So, this is why Im always feeling confused with this little stinker.

Friday, May 25, 2012

So much for getting this over with, but Camden has had a continuos fever since Wednesday around midnight. So, surgery off and we will reschedule or I may do another upper GI and some xrays to see how things are looking now. Im full of mixed emotions, as usual. He managed to eat part of a pickle the other night which is normally never able to happen. This doesn't mean his nissen isnt still too tight, just makes me wonder and keeps me confused. He still is retching sometimes during tube feeds (he isnt able to throw up with nissen) over a small amount of volume. We are back to the feeding pump all the time, so I am able to monitor volume and rate. So the retching is bothering me. It's normal for him to retch when he gets full too fast, but not this bad. He has always been able to tolerate 5 ounces at a time, now gets sick over 2, and this is the reason we are back on the pump with a slower rate. So the retching is something that has started up again NOT related to the nissen, reason that I want to check things out again.

For those who were wondering what this surgery was for: The Nissen (there are a few types, but I'll just try to give the basic understanding as best as I can) is where the surgeon takes some of the upper part of stomach and wraps it around the bottom of esophagus to protect esophagus (kind of forming a flap?) from severe reflux, OR to protect lungs from aspiration. With Camden having severe respiratory distress as a baby plus severe reflux he definately needed one. He had the first nissen wrap done at 9 weeks old along with his trach and gtube surgery. Then he reherniated at 9 mths old (colon was growing through his artificial diaphragm.) and his nissen happen to unravel at the same time, so it was redone at that time his diaphragm was fixed. Camden never ate anything by mouth and then when he was around 2 he started to experiment with food and that is when I noticed something wasnt right. Bottom line this nissen is too TIGHT causing food to get stuck in it. Camden is then stuck trying to get it out of his esophagus which is awful to watch, especially when he doesnt have the ability to throw up. In this past year the surgeon has tried to stretch the nissen through endocopy twice now (to avoid him being cut open for the 4th time) which has helped a little, but it has been over a year and we haven't accomplished much. The concerns were reintubating him for each stretching and not knowing if the stretching would actually even get the job done. So, I have put of redoing the nissen until today......which has been cancelled due to the fever. =/ I still do not know what is going on inside his little body, but I thought if we fixed the nissen, (or tried, there is no promises with all Camden's scar tissue) at least that part would be accomplished.

I skipped details, but I hope the above explained it well enough. =)

Camden wants to eat sometimes. For this to happen, we have to try to get things working if possible. This surgery has taken forever to get on the schedule for different reasons. Maybe God has other plans, I dont know, so we just wait for His guidance. Im the mean, time Camden is over all doing so well and I am beyond thankful.

Saturday, May 5, 2012

May 25th. I still dont have complete peace about it, but I know I will. He is choking off and on, about every other day. I have to come to realize that this is effecting his future in eating and that this nissen needs to be redone. That's all for today, Camden wants to go in the pool! =o)

About Me

Camden James joined our family on January 22, 2009, weighing approx 8-9 pounds and measuring around 22 inches with an UNKNOWN congenital diaphragmatic hernia. He joins his father, Marcus and I and three brothers and a sister.He has a trach and has been off ventilator since winter of 09. He gets all nutrition from a gtube.Life is not what it was, but we are adjusting to our new normal and trusting God as He continues to guide.... *Camden had his first "reherniation" diaphragm repair on Oct 30 2009, patched with gortex.* Some colon had made its way in chest cavity, behind his heart.*He was hospitalized due to his first sickness resulting from a cold(we think) for the first time on Jan 6 2010, at almost one year old.*REASONS FOR BLOGGING? Obviously to keep close friends and family updated but more importantly to help others with special needs children. Other blogs encourage me, give tips, and help me realize that I am not alone on this journey.I hope to do the same for them.*Camden was decannulated on June 2, 2010!!!*UPDATE for 2011 He finally took interest in eating, but it isnt possible due to his nissen surgery being too tight. New hurdle to overcome..